My Mom had her RA meds removed, and is suffering, and I am feeling helpless.

I am at a loss of what to do.

My Mom is 73, and has had RA for a 15+ years. Recently they discovered here platelet count was extremely low, so they removed her Methotrexate, and Leflunomide, and put her on Prednisone.

Then they started reducing her Prednisone, without putting her on a replacement DMARD.

She has deteriorated rapidly. She really can't care for herself now (she can't walk unassisted), and is home by herself often (I live 600+ miles from her).

Her doctor seems to have no plan to deal with her current state, and seems bent on removing all meds to see what happens. Which seems absurd given her condition.

She was at risk from low platelets, but was function and coping otherwise, but now she is debilitated and in constant pain.

Anyone have anything to offer hope in this situation?

Thanks for the thoughts.

I am in Canada, things are slightly different. They haven't provided any kind of home care at all.

She is in a rural area,and her RA doc is hundreds of miles away. Only sees her occasionally and issues decrees and really doesn't seem to care about consequences.

They started weaning down Prednisone immediately after putting her on it. they want to reduce it to zero with no other DMARD waiting.

I have read about thrombocytopenia and am aware that it is a dangerous condition. But IMO her life is much worse imminent danger with her current state.

edit:
I finally got in touch with my mother. It may be worse than I thought. She has finished the last her prescribed Prednisone, leaving her with nothing. I tried to convince her to go to emergency, while she can still get there. Her RA is so bad, she won't be able to get out of a chair when the Prednisone fades.

Post Edited (PeterScott) : 7/1/2018 4:32:29 PM (GMT-6)

***************HAPPY CANADA DAY !!!!)***************

To You, your Mom and all other Canadians here!!

Hi There:

Sorry, but we were away today. Aw, New Brunswick. That's great! One province that we have not been to yet. Maybe next year. We just got back from Newfoundland. Fabulous time there. We also live in Ontario. I can see how it is difficult to look after your Mom. I do hope that she has other people nearby to help her. R.A. can not only put a person in a wheelchair but can cause death.

I'm shocked that the Rheumy isn't giving her any meds. I have a feeling there is miscommunication going on there. You should be talking to her Dr. I believe that is illlegal to give a patient zero meds considering the shape she is in with this disease.

So, I take that to mean that she did not go to Emergency. What a shame! Believe me, they would only keep her a short while until the Doctors have her stabilized and in less pain. They only kept me for 6 days the last time. It was very nice having someone do everything for me until I was feeling better. Then I was ready to go home. They couldn't keep me in longer. I appreciated their help. If they find she is not able to go home for other reasons like she cannot mentally make good decisions, forgets important things, etc., that is another issue.

I know it is difficult to get our parents to do what is right for them. I went through it twice. My Mom and Dad both had/have Dementia along with their other conditions. It came on so sneakily that we didn't realize it for a couple years. But that is normal.

She was totally against any help or strangers going in. She fell at least 4 times. She also dropped her insurance on her house, gave some guy that she didn't know, $200. couldn't remember how to sign her name or fill out a cheque, forgetting to take her meds, out of the blue anger, etc. That's when we caught on.

So finally her Dr. said that she could not look after herself, simple as that. Now she is in a Home where she is well looked after and we visit her as much as we can. Plus we look after her home and property since she does not want to sell it. Another bad idea.

Oh I forgot about that. Seniors do not get disability but they do get the normal gov. cheque and spouses pension, GST and Trillium cheque. It pays for the Home, meds, etc. That's the money that your Mom is getting already probably. They also are able to get the same help that a person on Disability would get.

Here is some info from your Mom's province. Read right down to the bottom:

http://www2.gnb.ca/content/dam/gnb/Departments/sd-ds/pdf/Seniors/SeniorsGuide-e.pdf

Hi Peter it apears msOuchie has got you covered with info as she is from your area
all i could add is Try to get your Mom to go to the Emergancy room ( i know its hard ) otherwise you could phone her Local Doctor (Also her Rheumatologist) i know they wont discuss her medical with you But you can let them know of your fears and tell them what you see - her pain & disability levels and that she hasn't got local support , you never know she might not be telling them this
i know when my mother was ill she kept saying everything was fine and refusing help but we saw a totaly diffrent thing .

if you do not get a good responce from either Doctors then You phone the emergancy room and tell them There is Always a way around these things but unfortunatly it takes You to be agressive
i wish you & your Mother well

Hi Peter -

So sorry to hear about your Mom!

Maybe my story can help?

I took myself off Methotrexate and Prednisone in January. Yes, February, March and the beginning of April were very difficult - I survived (barely) on Tylenol and Aleve. But I also started taking CBD Oil in mid-March, then Full Spectrum CBD from late April on. The pains gradually started lifting, day by day. It took about 2 months to get bearable (so early May?), and I am now pain free - knitting again, walking around, etc. etc. FSO does not have THC in it, btw. I believe the reason CBD Oil works is because it contains antibiotic properties (I managed my RA with low dose minocycline for 6 years!) - you can research all of that online. I take about .5ml of oil every night - which is about 30 mg of CBD oil daily. Dosing is challenging, but again, there is information online about body weight / condition / appropriate dose. It's the only medication I take, unless you count Vitamin D. Wishing your Mom a good recovery! I am looking forward to there being more information about CBD as time and research go forward.

Hi Again. Thank you for the update on your Mom.

Good to hear that she is back on Prednisone. Hopefully, she will wean totally off of it when one of the newer drugs starts working.

When I started on Pred a long time ago, I was put on 10 mg. for a bad flare. That plus my other meds got me feeling better. Then I was weaned off of the Pred. After many bad flares through the years, they put me on 20 mg. since the 10 mg didn't work as well. It continues to go higher through the years. The highest I've been on was 40 mg. I'm weaned down to 5 mg. for some time now.

They are probably trying her on a biologic, if it is an infusion in her arm. That usually takes some time before the patient starts feeling better.

Yes, that's the unfortunate part of living in the country. The Doctors(including the Specialists) prefer to work in the cities where everything is more convenient, more equipment, etc.

I'm glad that your Mom has a new Rheumy. Hopefully, it works out well for them both. Keep complaining if she needs more. It would be good if a Nurse could visit your Mom occasionally, to see how she is doing or if she needs anything. Even just to have someone to chat with would be good. They have people in the cities and small towns who do that. She could also get Meals On Wheels probably. Each meal costs about $7.00, I think. Not gourmet or anything but it's hard to make food when a person is in a lot of pain and exhausted. Anything helps.

Take care and keep us updated please.